Welcome to the Forum BIGBRY

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AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2008 7:49 AM (GMT -7)   
BigBry said...
Hi all,
I’ve just joined this site. I have to say I’m sorry to see so many people here, but I’m glad to know I’m not alone in this. My ANA is 1:1280 Homogeneous, 1:1280 Few Nuclear Dots up from 1:640 six months ago and a CRP of 9.6 mg/l a rate 3x the high risk level.

I’ve been in denial for years living by the old adage “just walk it off” and “suck it up”. Only now after doing research into my conditions I recognize the continuous progression of my condition. Things I have just put to a hard day at work I now realize are symptoms of the condition. For years I’ve had trouble recuperating from injuries and suffered from several kidney infections. I now find myself unable to work with all over muscle pain, muscle spasms, joint pain, stiffness, cracking in all major joints and no energy to speak of. An hour at the pool trying to stay active and I hobble back to my car, but I’m not going to let that stop me.

Anyway here’s hoping all of you more of the good days than the bad ones.

Thanks for letting get this off my chest
BigBry

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2008 2:54 PM (GMT -7)   
Welcome Bigbry,

I started a new topic for you so others will know we have a new member.

Sounds like you might benefit from a little "pacing" in your life. We've learned that if we alternate activity and rest, in a ratio that is beneficial to our needs on any particular day/week, that we actually heal much faster. So if I am in a flare and doing really poorly, I might be active for 5 minutes and rest for 20-40 minutes. Then go back and pick up on that activity (like making dinner or picking up around the house) and then rest. Problem is . . . this is REALLY impossible when you are working outside the home. Gradually I increase the activity time, as my body heals . . . and I'm rest less and less . . . but I always fit in frequent time to get my feet up and rest several times through the day. This has helped give me my life back. It won't always work . . . but it is one thing we do have a lot of control over.

I also find that if I push my walking program to hard or fast or long, I actually deteriorate instead of getting stronger. So after years of hitting my head against a wall . . . willing my body to obey . . . and getting poor results . . . I'm finally pacing and doing way better.

Your post sounds like you aren't working at the moment. I'm so sorry that things got so difficult for you. There are some great members here who have been WAY helpful to me. I hope you enjoy the forum.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Post Edited (AlwaysRosie) : 11/10/2008 7:57:24 AM (GMT-7)


Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 11/10/2008 10:22 AM (GMT -7)   

Welcome to the forum!

I'm so sorry you have to deal with all this, but you are in good place for support here.  Every time I "whine" on here, somebody tells me it's OK.  wink

I'm just curious.  How often and how long do you walk for exercise?  I have good intentions of starting a walking program, but I don't know what's reasonable.

I, too, have problems with kidney infections. Is it related to MCTD?


 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/10/2008 3:05 PM (GMT -7)   
Hi Heartsong . . . I'm not sure if you are asking BigBry . . . or me . . . about the walking.

For me . . . my walking program starts in the house. Just walking around the rooms in my house. When I am able, I then walk in the backyard or down to the mailbox. I've found it better to do small amount of time 2 or 3 times a day than one bigger block of time or distance. My body seems to tolerate it better and it doesn't send me back into a flare as easily.

When walking down to the mailbox 3x a day is fine, I start walking around the culdesac (just a couple houses from mine) . . and I might do that one of the three walks and eventually doing that 3 times a day. The I start circling my whole street (ten houses long). . . . and so on, until I've built up to a 30 minute to one hour walk. I really love to walk on a path in the woods. I can walk longer and further than on concrete.

I hope this helps. The trick is to start s-l-o-w-l-y and build very gradually so you trick your body. And make sure you drop back in distance or time if your body over-reacts. I used to push myself too hard and I caused major problems doing that.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


BigBry
Regular Member


Date Joined Nov 2008
Total Posts : 106
   Posted 11/10/2008 5:43 PM (GMT -7)   
Hi AlwaysRosie & Heartsong

Thanks for the support and advice.

I've been trying to come to grips that I have this and now i have to learn to deal with it.

I think your right about learning to pace myself. I used to work some very long days up to 32 hours long to get things fixed for public transportation, but it would take a week to recuperate from that. Those days are over. It's about live for now not what should be or could be but what is.

When I've been researching MCTD it has mentioned kidneys as one of the things affected. I'm not positive that the kidney infections are directly involved, but they do tend to happen during flares.

Thanks Again
BigBry
DX: IBS 00, MCTD 05, Depression 06, Sjogren's 07, GER 08  
Meds: Plaquenil 400mg, Prednisone 20mg, Celebrex 200mg, Effexor 150mg, Nexium 40mg, Metoclop 10mg and numerous other supplements
 
Life is what you make of it.  Just something I try to remind myself every day.

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